Valerie O’Carroll (60) was first diagnosed with the condition on October 9 2019. “A date I’ll never forget,” she says, recalling the diagnosis.
She had been due to set out on the pilgrimage in May 2020 with 14 of her friends and family, but the pandemic saw their plans cancelled three times before they finally set off in May of this year.
MND affects how people walk, talk, eat and breathe, but each case is different. Scientists have yet to discover a cure for the condition, with life expectancy from three to five years after the onset. Many people with MND can lose their voice.
Ms O’Carroll said coming to terms with her illness has been difficult.
She told Independent.ie: “It is something you never forget even for a minute because it is always there. What passes in my mind is clear but then when I go to say it, it comes out slow and, in my opinion, terrible.
"I do not believe I’m bad enough to use a speaking device yet, but it’s always there, you never forget you have it.”
Around 140 people in Ireland are diagnosed every year with the disease, according to the Irish Motor Neurone Disease Association (IMNDA).
“The IMNDA are a lifeline to anyone with this disease,” says Ms O’Carroll. “They are always there for you when you need them.
"I have received counselling, holistic therapies and a lot of support though their nurses.”
Ms O’Carroll worked as a manager at the Ballymun Child & Family Resource Centre until she retired in 2021.
Since being diagnosis, she says her condition has progressed and affected her speech and energy. However, she says: “Apart from that, I am doing really well. I try and stay positive as much as is possible.
“My voice has gone very slow, particularly in the past year. The fatigue is one thing that is really bad.
"I find I get tired very easily, and this makes my speech worse. I have to lie down during the day, and I could be in bed very early in the evening.”
After receiving the news of her diagnosis, her friend and colleague Louise Smyth asked her if there was something she would really like to do.
“I said without hesitation the Camino de Santiago, but I really thought I would not be able to do it.
"We said it to a few more people who decided to do it with us. Momentum was building up. My two daughters, Orla and Siobhan, were up for it as well.”
In total, 14 women joined Ms O’Carroll on the Camino de Santiago, including 11 of her Irish friends, her two daughters, and her sister-in-law.
Planning for the trip began in 2020 when the Resource Centre Ms O’Carroll worked for set up an iDonate page and began fundraising for the Research Motor Neurone charity (RMN).
“I decided to fundraise for RMN because I had a lot of faith in Professor Orla Hardiman and I felt this was a very worthy cause. I also started a trial drug in February 2020. So I really felt strongly about finding a cure for this debilitating disease.”
The 15 women, calling themselves Valerie’s Warriors, set the date for the expedition in May 2020, printing out different coloured t-shirts for each day of the trip with “Walk With Me for MND” on them.
Ms O’Carroll was the only one in the group to have been diagnosed with MND.
“These 14 women were truly my warriors, each and every one of them were absolutely amazing,” she says.
The pandemic cancelled their plans and cast a black cloud over Ms O’Carroll’s hope that she could complete the trip.
“The more it went on, I was convinced I wouldn’t do it,” she recalled.
The trip was moved to September 2020, and again to May 2021, when they eventually decided to give it a year and head off to Spain in May 2022.
“May 2022 arrived and I was so looking forward to it, although I was nervous about it. We set off on May 16 for seven amazing days. It was the best experience of my life.
"Even though I am not religious, I found it a very spiritual experience. Two-and-a-half years in the planning and we got there. We raised €20,000.”
In preparation, Ms O’Carroll did an hour of walking every day in her local park, but she admitted none of them were “really prepared for the 113km”. They walked the last stage of the route from Sarria to Santiago, for five days in a row, ending in Santiago de Compostela.
Ms O’Carroll is now preparing to hand the cheque to RMN on July 20 in front of the Ballymun Child & Family Resource Centre, where this entire journey began.
“We are really hoping the local community will be there because after all, without them we wouldn’t be way beyond our target,” she said.